Researchers at University College Cork (UCC) are collaborating with the inventor of a self-care app for people with Parkinson’s disease with a view to understanding how hormonal changes in women impact their symptoms.
Richelle Flanagan was diagnosed with Young Onset Parkinson’s disease shortly after the birth of her daughter. Based on her own experience, and those of other women, she developed My Moves Matter, a digital health app to track women’s symptoms across their menstrual cycle.
Ms Flanagan believes that specific treatment for Parkinson’s symptoms in women is an area that has been long overlooked by the medical community, and is now working with a team from UCC’s Department of Anatomy and Neuroscience on a ground-breaking study.
The study, supported by the Health Innovation Hub Ireland (HiHi) and Enterprise Ireland, seeks the help of women with Parkinson’s Disease, who are being asked to track their symptoms using the My Moves Matter app.
The research will be the first in the world to track how hormonal changes in women with Parkinson’s impacts their symptoms. It is hoped that their findings will aid patient-specific treatment and management of Parkinson’s disease.
“Many people think Parkinson’s disease only affects older white men. The reality is that 40% of people living with Parkinsons are women and up to 30% are under the age of 60. I myself was diagnosed shortly after the birth of my daughter.
“My experience of the impact of my hormone fluctuations during my menstrual cycle and subsequently going through the menopause and the effect on my Parkinson’s symptoms led me to develop the My Moves Matter as a tool for women to be able to validate what they experience during these hormonal changes so that they can advocate for themselves. They will have a means of showing their neurologist the impact of their hormones on their Parkinson’s symptoms and get appropriate treatment.”
“The study with UCC is so important for women with Parkinson’s as it will be the first prospective study of its kind to track the impact of the menstrual cycle on Parkinson’s symptoms. There are no clinical guidelines for the management of symptoms worsening in relation to hormonal changes in women.
“My hope is that this study may help to lay the foundations for the development of such guidelines, which would be transformative for many women who have worsening of their symptoms for 1-2 weeks of every month which can be very debilitating leading to work absences, inability to look after their families and often giving up work,” she said.
Professor Aideen Sullivan, Head of Department of Anatomy and Neuroscience and lead researcher on the study said;
“There is increasing global awareness of the unmet need for patient-specific treatment and management of Parkinson’s disease. This is particularly important for women with Parkinson’s, who have unique needs. Women may experience Parkinson’s symptoms differently at distinct stages of their monthly menstrual cycle, and of their reproductive lifecycle.
“The involvement of patients in the design and dissemination of our research is critical for its success. Richelle is such a strong and effective advocate for people with Parkinson's, especially for young women who are struggling to manage the many and varied symptoms of Parkinson's, along with balancing their family and working lives.
“Her lived experienced of Parkinson's greatly enriches our research, strengthening its quality and relevance, and ultimately its impacts on the patient community.
Co-lead on the study, Dr Lucy Collins Stack, said:
“The knowledge gained from this study will further the advancement of gender specific treatment for women during the peri-menstrual period.”